A mum's diary through her 2 year old's cancer journey

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You can’t pour from an empty cup!

I haven’t written in this blog for quite some time. Reason being is that the daily life of having a toddler with cancer is getting far too depressing and busy to have time to write anything and also I’m sick of spending all my spare time out of the hospital talking about Cancer. However, time for a catch up and possibly a bit of therapy for myself to get it all out.

On 1st June, Cody had his major surgery to remove his tumor. It was a very long and intense day. The surgery itself went for 4 hours. We had no reason to worry though, it was a complete success. The surgeons removed the entire tumor in full without it breaking or spilling into his body. Cody healed quickly and nicely and will forever have a large scar across his tummy, its all good though – chicks dig scars!

A few people have asked me if the tumor is out then why would he still need chemo? The answer is simply that cancer is a bitch and even though the tumor is gone there is still lots of microscopic cancer cells left over in his body.

Cody had a week of Radiation to help kill the leftover cancer cells. The radiation doesn’t only kill the cancer cells but also changes their DNA pattern so that the cells grow as a normal cell and not a cancer cell. The radiation wasn’t too bad at all actually. Cody needed a general anesthetic every morning of the radiation which wasn’t too nice, but we were out of hospital in about an hour and had few side effects. Chemo is far worse than radiation. The radiation took place at Royal Adelaide Hospital, so we were joining in with the adults with cancer. There were lots of dear old people there and they seemed to be happy to see a little boy around the place. I sat next to one old lady and she said to me “He shouldn’t be in here. I should be, I’m in the right place because I’ve had my time, but not him”…I know its not right but I didn’t disagree with her. Truth is, I wish no-one had to be in there, no-one at all, young or old deserves to have cancer.

We are halfway through our Chemotherapy treatment plan. This week, Cody will have a Heart Ultrasound and CT to check on how the cancer is doing. Hopefully, the chemo is doing its job and killing off the cells.

Chemotherapy. Its not a promised cure. Its all trial and error. Chemo is designed to kill off cancer cells, which is great, however chemo drugs are so toxic that they kill off all the good in Cody’s body. It makes his bone marrow stop producing blood, which makes his blood count low, often. After a 5 day week of chemo he is very weak and sick. His immunity is at zero. He has had a cold for over a month and its not going anywhere soon because there is no goodness in his body left to fight off the virus.

This week we had to go to hospital because he had a fever with his cold, which means he needs antibiotics to clear the infection from his body. Chemo kills anything good in his body. Antibiotics kill anything good in his body. We better have good results from his CT this week, because we need a bit of hope to know that all of this suffering is for a ‘cure’.

I always used to think that people died from the cancer growth itself, but sometimes it can be from the treatment because its just so harsh on the body. Is there an alternative? No. Not for us anyway. Cody is 2 and has a very good chance of thoroughly beating this cancer buy following our chemo treatment plan. We are just really in the thick of it all now and its bloody hard. I look at my son and his legs are skinny and bruised, his tummy has a massive scar reaching across him. Followed by a smaller scar above that one, with a round circle poking out of his body, its his port and the skin surrounding it is covered in tiny pin pricks from all the times the nurses need to access it. On his neck is another small scar where the line of the port was put through. He is pale white on a daily basis now. His eyes are sunken back with dark circles underneath. He has a couple of eyelashes left and a couple of tiny strands for eyebrows and a bit of fuzz on his head.

Cody is truly so beautiful to me, I love him so much. Every now and then the thought of Cody losing this cancer battle slips into my mind and i have to push the thought out straight away. If i get into that head space then i wont be fighting with him anymore, and we need all the strength we can get. Staying positive, isn’t just a good idea at this time, its the only thing that will get our family through this. We have spent so much time in hospital now that our family time together is truly cherished. The truth is once I’m out of hospital i don’t want to talk about Cody’s cancer. I know people care and we appreciate the kind messages and thoughts from people. But these days, the cancer has become our entire lives, so sometimes when we get a break from hospital, me & Ben like to pretend we’re a normal family again without a care in the world. My poor Jack is on school holidays and has spent his first week of holidays in hospital instead of doing fun school holiday activities. The cancer affects all of our family greatly.

The stress has taken its toll. Last week i turned 30. I looked in the mirror and realised i look more like 50. The last few months of stress has taken its toll. My hair is going grey, my skin is ageing and looking haggard. The stress eating is taking its toll when i step on the scales. I’m slowly starting to realise that if i don’t look after myself then i wont be much use to my family. Running on empty isn’t working out for me these days – ah who am i kidding, no one’s ‘running’ here!

Anyway, to end on a positive note, we are officially at the halfway mark of our treatment plan. I’m not sure what the future will hold for Cody, but we’ll continue to take one day at a time.

Thank you everyone for your kindness and taking the time to read this.

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5 thoughts on “You can’t pour from an empty cup!”

oh elise I’m so sorry but we can all start to talk of positive things and if you don’t want to talk about cancer then we wont so I have this present sitiing here for jack and cody that I have to get off my bum and get them to you or they wont be able to use them so I will be in contact and will give you notice by a message soon all our love and you are all in our prayers and not forgotten about all our love the Williams family

Elise and family: know that you are in our prayers from the other side of the world. Not wanting to discuss it outside hospital is such a good thing, it means you also as a family are taking some control over the uncontrollable, by keeping topic contained. Half way through is fantastic. Taking each day, sometimes each half day or even hour at a time is exhausting, but it adds up and moves you all forward. Biggest love and hugs x

I keep forgetting how much of a daily battle it is for you guys. Whenever I visit or see you guys about, you always have a smile on your face and make jokes just like always. That’s proof to me of how strong you both are and how much you want things to be normal. And little Cody seems himself to me too. So cute and cuddly and ‘talking’ in his usually way, so it’s sometimes easy to forget that it’s such a massive thing for him too.
So thanks for the blog, Elise. And remember, we’re all here for anything at any time, whenever you guys need it 😊

Thanks Roll Rolls, we try our best to be normal when we see our friends cos we need to have some kind of normality, but daily life has changed quite a lot for us over the last few months, thanks for that boss 👍

Hello, Elise and Ben, and Cody and Jack!
Thank-you for your latest post! I feel for you as to how hard it is to “pen to paper”, and the effect on you and Ben as parents while you battle for Cody’s well-being. And I felt sad for Jack’s school holiday “activities”.
I have nothing but total admiration for you two, and I totally support you for your hope that all this will be behind you all one day soon!
Best wishes!
Len Millar